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In response to reading Jamie Deckoff-Jones statement elsewhere on here that she and her daughter are solidly at 80 Karnofsky points. I should note I'm thrilled they are improved in whatever ways they self evaluate that improvement, but that internet reports and especially the Karnofksy scale really irk me deeply.
I do not really find the Karnofsky scale useful. Perhaps as some very general indicator.
It can be found here:
http://www.anapsid.org/cnd/diagnosis/karnofsky.html
As far as my life goes, on a day I have a migraine, haven't slept because of toxic or bad mold exposure, asthma from hayfever (I don't take medicines), or whatever...I feel like I'm btw 60-70 so put me at 65. If I need to find a place to rest, to nap, to whatever, then my partner will do the shopping, take care of our life needs for that day. He pitches the tents, on the occasions we've gone camping, though I have tried but I'm not too good at it. His assistance benefits me greatly. This is 60: Disabled; dependent. Requires occasional assistance; cares for most needs.
On days I've slept and am in a decent environment, I feel like a 90. This is 90: Able to work. Able to carry on normal activity; Minor symptoms. I really do vary btw 60 at my worst ("please drive me, I haven't slept, I'm exhausted, I feel like I can barely function"...although, even on 3 hours sleep the other day I drove half a day...very slowly...as we have two vehicles now so there was no choice)...versus, "I feel good, it's sunny, I slept, I'm going to run some errands, let's take a walk, etc.) Today I don't know what I'm at but PMS and maybe the fabric softener on the hotel bed has led to bladder inflammation, so I only slept about 5 hours , but I'm doing all our laundry by hand--blankets, sheets, clothes, in the bathtub, to avoid the hotel gunked up toxic washers--walking around the hotel to discreetly dry stuff out back on my truck in the sun, wringing stuff out etc. I don't know what I'm at today but I sent him into the city an hour away to get me some probiotics for this flareup and some raw foods. I *do* need that assistance. I couldn't do all this myself--the laundry *and* go get the probiotics an hour away. And that *is* because of my condition--whatever combo of mercury poisoning, fungus, lyme, and MCS, whatever version of this condition is specific to me----or I could use a normal gunked up Tide and fabric softener washer, and wouldn't need a probiotic at all. And of course if I had my own safe nontoxic house in a good place, I'd have my own washer--eventually I hope and pray life will be smooth and easy like that...
80 is Able to work. Normal activity with effort; Some symptoms.
Jamie says she and Ali are solidly at 80. Ali quit school as it was too stressful, and she was afraid she'd relapse. Sounded like a wise decision and she's enjoying writing--but is that 80? Jamie wants to go back to work part-time. Is that 80? I guess my interpretation of 80 would be someone with a fulltime job who has a moderately intrusive condition, like arthritis, or diabetes, something that does intrude, but doesn't prevent a normal life.
What the heck is 80 on the Karnofsky scale in reality?
I've been frustrated with the various scales out there ever since I first browsed them. I really dislike these scales. Perhaps they are just too bare bones and subjective. I know there are a few others that are very popular and I look at them and they don't reflect my life. And what if I'm an 80 on a certain day but the symptoms have me depressed and frustrated? These scales don't seem to really reflect a life except in the vaguest terms and what is their purpose anyway? I have written this on this board a while ago, maybe a year ago.
Another thing that really irks me is when people post, "I'm xx% improved." What is that predicated on? I once had a CFIDS sufferer write me that he was 35% improved and on his way to wellness and would return to work. Shortly thereafter he got his SSDI...maybe that was just a good day or week????
Don't most people vary--perhaps not as much as me, more MCS-types vary like me (Dreambirdie being a case in point--I dovetail with her ups and downs)...but anyway...
I feel grateful in contrast when people report their actual abilities and disabilities. Can you take a 15 minute walk? An hour walk? Can you now hike mountains (like Erik Mold Warrior)? Can you travel without crashing? How is your cognitive function. Etc etc.
I do think, for those with POTS or push-crash, as mentioned in this thread, the lessening of either symptom in that case would seem a very secure marker of improvement. I don't really have push-crash, though. Maybe if I didn't do all my therapies I'd have crash-crash
I do not really find the Karnofsky scale useful. Perhaps as some very general indicator.
It can be found here:
http://www.anapsid.org/cnd/diagnosis/karnofsky.html
As far as my life goes, on a day I have a migraine, haven't slept because of toxic or bad mold exposure, asthma from hayfever (I don't take medicines), or whatever...I feel like I'm btw 60-70 so put me at 65. If I need to find a place to rest, to nap, to whatever, then my partner will do the shopping, take care of our life needs for that day. He pitches the tents, on the occasions we've gone camping, though I have tried but I'm not too good at it. His assistance benefits me greatly. This is 60: Disabled; dependent. Requires occasional assistance; cares for most needs.
On days I've slept and am in a decent environment, I feel like a 90. This is 90: Able to work. Able to carry on normal activity; Minor symptoms. I really do vary btw 60 at my worst ("please drive me, I haven't slept, I'm exhausted, I feel like I can barely function"...although, even on 3 hours sleep the other day I drove half a day...very slowly...as we have two vehicles now so there was no choice)...versus, "I feel good, it's sunny, I slept, I'm going to run some errands, let's take a walk, etc.) Today I don't know what I'm at but PMS and maybe the fabric softener on the hotel bed has led to bladder inflammation, so I only slept about 5 hours , but I'm doing all our laundry by hand--blankets, sheets, clothes, in the bathtub, to avoid the hotel gunked up toxic washers--walking around the hotel to discreetly dry stuff out back on my truck in the sun, wringing stuff out etc. I don't know what I'm at today but I sent him into the city an hour away to get me some probiotics for this flareup and some raw foods. I *do* need that assistance. I couldn't do all this myself--the laundry *and* go get the probiotics an hour away. And that *is* because of my condition--whatever combo of mercury poisoning, fungus, lyme, and MCS, whatever version of this condition is specific to me----or I could use a normal gunked up Tide and fabric softener washer, and wouldn't need a probiotic at all. And of course if I had my own safe nontoxic house in a good place, I'd have my own washer--eventually I hope and pray life will be smooth and easy like that...
80 is Able to work. Normal activity with effort; Some symptoms.
Jamie says she and Ali are solidly at 80. Ali quit school as it was too stressful, and she was afraid she'd relapse. Sounded like a wise decision and she's enjoying writing--but is that 80? Jamie wants to go back to work part-time. Is that 80? I guess my interpretation of 80 would be someone with a fulltime job who has a moderately intrusive condition, like arthritis, or diabetes, something that does intrude, but doesn't prevent a normal life.
What the heck is 80 on the Karnofsky scale in reality?
I've been frustrated with the various scales out there ever since I first browsed them. I really dislike these scales. Perhaps they are just too bare bones and subjective. I know there are a few others that are very popular and I look at them and they don't reflect my life. And what if I'm an 80 on a certain day but the symptoms have me depressed and frustrated? These scales don't seem to really reflect a life except in the vaguest terms and what is their purpose anyway? I have written this on this board a while ago, maybe a year ago.
Another thing that really irks me is when people post, "I'm xx% improved." What is that predicated on? I once had a CFIDS sufferer write me that he was 35% improved and on his way to wellness and would return to work. Shortly thereafter he got his SSDI...maybe that was just a good day or week????
Don't most people vary--perhaps not as much as me, more MCS-types vary like me (Dreambirdie being a case in point--I dovetail with her ups and downs)...but anyway...
I feel grateful in contrast when people report their actual abilities and disabilities. Can you take a 15 minute walk? An hour walk? Can you now hike mountains (like Erik Mold Warrior)? Can you travel without crashing? How is your cognitive function. Etc etc.
I do think, for those with POTS or push-crash, as mentioned in this thread, the lessening of either symptom in that case would seem a very secure marker of improvement. I don't really have push-crash, though. Maybe if I didn't do all my therapies I'd have crash-crash